BOSTON — I was not surprised by the president’s story. Health care reform is not just a matter of spreadsheets and patient charts. It’s a repository of the personal narratives we carry around in our family hard drives.
This time, the story he told was about end-of-life costs and caring. It was about Madelyn Dunham, the grandmother who had died just a day too soon to see him elected president. You see, the woman called Toot was terminally ill with cancer when she fell, broke her hip and then agreed to a hip replacement. The surgery was “successful” but two weeks later, as the president said, “you know, things fell apart.”
Obama told a New York Times reporter that he would have paid for the operation himself if necessary, but then he asked aloud whether society should be expected to pay for such treatment of any other terminally ill parent or grandparent. Was this a “sustainable model”? asked the presidential grandson, adding, “So that’s where I think you just get into some very difficult moral issues.”
I was struck by this because I remembered Obama’s announcement of Dunham’s death in November: “She died peacefully in her sleep with my sister at her side.” What a different image of dying that evoked than the one that describes a fall, an emergency, surgery, the tumbling decisions that his family, like so many others, faced.
But I was also struck by the way the president framed Toot’s treatment as one of the “difficult moral issues” surrounding health care costs. Indeed, folks on the right saw this story as Obama’s warning about rationing ahead. But aren’t there places at the end of life where ethics and economics, compassion and cost, dovetail rather than conflict?
There are “difficult moral issues” ahead. But is this one of them? Is a health care system that offers “everything” to everyone — hip replacements to terminally ill patients — morally superior? Or suspect? Can’t we decide when more is not more?
I won’t second-guess decisions in those last weeks of Toot’s life any more than I would second-guess my own family’s decisions as the avalanche of choices rolled toward us in my mother’s last months. But I do think that what our system may need is not more intervention but more conversation. Especially on the delicate subject of dying.
Today more than one-fourth of Medicare dollars are spent in the last year of life. Most people want to die “peacefully” at home but 80 percent die in hospitals. So, much of our money goes to the kind of death we don’t want.
It’s true that the financial incentives of our medical system are geared toward intervention, but so are the emotional incentives. Doctors are in the business of fixing, trained to write “hope” on the prescription pad. These professionals are often uncomfortable amateurs in the business of talking about their “failure”: death.
As for the rest of us, how many families actually have “the talk,” something as dreaded as “the talk” about sex? How many tiptoe around the questions that surround death, parents not wanting to upset children, children not wanting to upset parents? As if we were not in it together.
I have known experts who could speak in public on this subject but not to their mothers. No one is immune from denial — not even the anthropologist Margaret Mead, who preached the need for an open conversation about death. When her time came, and her daughter came to talk, Mead said she wasn’t dying, she had too much left to do.
In the wake of the Terri Schiavo case, the “living will” became a common document. On Web sites now, “The Five Wishes” are downloaded as family talking points that go beyond “pulling the plug.” But denial is still the default position. And maybe the destructive position.
It turns out that end-of-life discussions between doctors and patients do not produce fear and depression. Recent research shows these conversations result in less aggressive treatment, lower stress, a better quality of life for dying patients and comfort for those who will mourn them.
If this is rationing, I call it rational.
Madelyn Dunham died “peacefully.” But the “difficult moral issue” embedded in this story is actually a simple one: More expensive care is not always better care. Doing everything can be the wrong thing. The end of life is one place where ethics and economics can still be braided into a single strand of humanity.
Ellen Goodman is a Boston Globe columnist. Her e-mail address is ellengoodman@globe.com.
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